Reading a list of symptoms is very different from knowing what they’re like to live with. Even though everyone is different, the women who participated in this project collectively have had all of these symptoms and have shared their experiences.

We visit my dad each year on a mountain where he lives and enjoy a beautiful white Christmas with family. Each year, I’ve suffered from what I assumed was basic elevation sickness. What I realize now, is my LAM had gotten progressively worse each year we went to see him. Beginning with slight headaches, then nausea, then feeling dizzy and light headed. This time it was so bad, I began to pass out sitting up on Christmas morning.

I went to hospitals three times over the years with severe chest pains. In addition to fatigue, I started getting a “tickle” in my lungs and an occasional wheeze or squeak that no one else could hear (not even doctors!). I would get periods of coughing fits, where I was sore and exhausted from coughing all night.